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Ileostomy and Eating Disorder

Posted by LenainLondon, on Fri Feb 22, 2019 6:45 pm

I recently had to have an emergency right hemocolectomy which resulted in an Ileostomy. This was due to my bowl twisting and completely rotating. The result of this was a lot of my colon died and was removed.

I am greatful to be alive as it was a close call but have found the suddenness of it all quite hard quite to adapt to. On top of this I have a long standing eating a ( anorexia and occasionally bulimia ). I am finding juggling the two quite tough -
especially the nutritional side of it as my diet had had to completely change . I also suffer from severe depression and this had knocked me for six- although I am trying to stay positive

Does anyone else here have this problem and any advice???

Many thanks for any help

LenainLondon

 

Reply by Cheekymonkey111, on Fri Feb 22, 2019 7:11 pm
Don’t have any real practical advice but would say stay positive and take everything one step at a time. I had my Ileostomy 3 months ago was lost at first as it was all very sudden and unexpected but now I’m pretty much back to where I was 6 months ago before I became ill bar a few lifestyle changes.

Good luck but I’m sure you will be fine xxx
Reply by LenainLondon, on Sat Feb 23, 2019 1:50 am

Thank you for response. Am trying to stay positive and take things little steps by little steps! 

Reply by Cheekymonkey111, on Sat Feb 23, 2019 3:31 am

There are plenty on here that give you plenty of tips aregarding your pouch. What made it easier for me was to talk about what I’d had done openly with friends and family and try and keep a sense of humour about it. It’s amazing the misconceptions ppl had about it and some of the weird and wonderful questions I was asked. But I know that’s not for everyone.

The important thing is to take things slow and listen to your body and not be in to much of a hurry. 

Once you found your way u will be fine x

Reply by LenainLondon, on Sat Feb 23, 2019 8:26 am

Thank you. I am finding that my friends are just really interested about it all 😀. I also agree that having a sense of humour is essential!!!

Reply by Cheekymonkey111, on Sat Feb 23, 2019 9:31 am

My friends are brutal I couldn’t have anything but a sense of humour about it lol. The thing is no one who’s never had one has a clue what’s involved that’s why there so interested. If I had a pound for the amount of times I been asked how I fart I be a millionaire. Lol

 

On a serious note if u do need some advice or struggling with anything my email is in my profile so if u not sure of anything just ask. 

Reply by NewlifeVictoria, on Sat Feb 23, 2019 12:01 pm
I lost my friends since I been with a bag on my stomach really sad to say most are not even saying hello nothing family I have my dad and my daughter and I don’t beg people to like or talk or just hang out with me,, people are not nice I have many stories and I have to say I have a big heart and care about everyone but seems the more I do the more they distant themselves and I’m
Very sad and depressed over him and I know can’t make anyone like you but anyway don’t get it I guess my friends and family aren’t nice people I would appreciate anyone want to chat I’m here promise to be a friend 😢 Victoria
Reply by Cheekymonkey111, on Sat Feb 23, 2019 12:18 pm

Wow Victoria I’m so sorry to hear that. I feel so lucky now seeing how ppl rallied round me when I was struggling.

I did realise who my real mates were when I was ill as I pushed everyone away because I didn’t want them to see me in the state I was in at the time. 

Once I was recovering my true friends came back as they knew it wasn’t me who pushed them away but the situation I was in.

As I have said in a previous post my friends and family are brutal when it comes to humour as am I and that really helped putting ppl at ease in the first few weeks joking about things we shouldn’t have really joked about but that worked for us.

 

As I have said before I am a friend to anyone and will always here for anyone for support or even someone to vent at should they need to 

 

happy weekend to all my ostomate xxx

dls
Reply by dls, on Sat Feb 23, 2019 12:50 pm

LenainLondon, I wa born with and have suffered from untreatable clinical depression all my life. If your depression is different (not genetic), get he helpyou need, including genetic testing if you can.  As my type of depression runs in the family, those who have it can help.  Early on, I was told I should never take anti-depressants.  Genetic testing proved that to be true.  My first cousin committed suicide due to an incomplete medial profile. Of course they gave him anti-depressants--the day he was released he jumped of a tall building.  He was 21.  If you can get your depression under congrol (or gone), you'll nave no troubles adjusting to all the new things in your life.  Your struggles with your eating disorders have, I'm sure taught you much. They probably add to your depression.  Get your help, there is no stigma, believe me.  You've been ill and had your body rearranged...depression as a 'side effect' is listed everywhere for recent ostomates.  You're here, so you're off ot a good start...you're doing something positive and the wisdom and advice on this site is incredible...so many long time ostomates, many wilth additional problems, all handle things with practical wisdom.  Ask away, you will learn many important things here,  and we all want to make you feel better.

dls
Reply by dls, on Sat Feb 23, 2019 1:08 pm

Victoria and Cheekmonkey, Really?  Your've lost friends due to your little stoma?  WHY?  For my part I don't lose friends because I don't tell anyone.  What's in my pants has never been a big topic for discussion.  My best friend, who I've know for over 40 years knows, and it makes no difference.  Wy would it.  As I had a colostomy due to cancer, when people ask about it, I tell them "I had one big mass in my ass" and don't elaborate.  Only one person ever asked me if I had 'the bag thing'.  I said yes and it has made no difference.

I've heared stories like this before.  Why do your friends care about your new body hygiene?  It makes no sense.  As I never tell anyone, I can assure you no one knows unless I tell them, and I see no reason to do that.  I have little family left, but my sister and brother in law were happy when I 'got away'with just an ostomy and not die of cancer. On my surgery day, my daugter and a few friends were right there when I came out of surgery--I was a lump in a great deal of pain.  They helped me open my Mac and, well there were about 40 email messages wishing me well , all asking for contact when I felt better. I had prayers and gifts and to this day, not one person as left my life due to my stoma...ridiculous.  Again WHY?  Please enlighten me I am truly interested as I red about this more than I'd like, as well as partners and even marriages breaking up.  I have a male friend who I meet shortly after I completed my last round of Chemo.  He knows I had surgery 'down there'.  Gave him the 'mass in the ass' bit.   It will a year we've known each other this April.  He doesn't know, nor does he need to, and as he has his own medcal problems, he wouldn't run away if, for some reason I had to tell him.  Knowing him, he wouldn't care.  Elighten me.

Reply by NewlifeVictoria, on Sat Feb 23, 2019 1:46 pm

Dls Hi thanks for the email and that’s great you have people who love and care and even if you told them they would stand by you is what you said? Then there friends and good family your lucky and you are I’m sure thankful for that, I’m sure you read there’s many here that this same thing happen? You don’t get it myself but it is what it is and people just really don’t care about your feelings and your experience,,, happy to here you had emails,gifts, and love feel special hun and I’m happy for you and the money seid he had them around I didn’t I was left alone I was sick with uc for months put in a nursing home and story and d long but will stop here and that’s nice you have caring people in your life feel gifted and thanks for sharing Victoria 

Reply by NewlifeVictoria, on Sat Feb 23, 2019 9:08 pm

Hi also didn’t tell family and friends about my ostomy they found out by others and that shouldn’t of mattered!You know what I Mean?Forgot to day this in my other mail! Victoria.  Hope everyone is healthy 

Reply by Dunja, on Sun Mar 24, 2019 12:41 am

Victoria my heart sends u a big ole’ hug! I’m old school , screw them. Me & my stoma are one. Either take us or don’t . Your losss not mine. Love yourself. Honestly eating is a *** for me. We have to eat so much just to maintain a healthy weight. So plz watch for triggers gf. If you need someone to yak to I’m here. Love to be of help or offer friendship! Have a blessed day GF!

Reply by justkeepswimming, on Mon Oct 07, 2019 9:21 pm

No one has responded to this post in awhile, but just came across it and figured I probably should say something.

My heart really goes out to you, and I can actually relate quite a bit.

I was diagnosed with ulcerative colitis when I was 14, and developed anorexia around the same time (though no one knew then...except for me).

I had an emergency colectomy performed when I was a senior in high school. As I was a senior in high school, I was pretty eager to get the ileostomy reversed, but any attempt at reversal resulted in multiple complications and more surgeries.

So, long story short, it has taken me a very long time to (1) make peace with having an ileostomy, even though it saved my life; and (2) to seek out help for the eating disorder, learn how to give my body what it needs, and be okay with doing so. Oh, and yes, I also dealt with a lot of depression along the way.

While it hasn't been easy, I'd say I'm in a relatively good and stable place now - so hopefully that gives you some reassurance that it is possible! 

Re: the nutritional side of things, hopefully once you've recovered from the surgery you'll be able to introduce things back into you diet and get back to eating relatively normally. I'll eat anything now (literally), though I am extra careful about a short list of things (popcorn, mushrooms, cooked spinach, corn, oranges, apple peel...I'll still eat all of those things, just limit quantities and chew well!). Given your history, I'd be extra careful about trying to eat perfectly for the ostomy. The vast majority of ostomates find that there are actually very few things that they can't eat. One thing that I have found to be helpful (both with regards to the eating disorder and the ostomy bag), is to include starch/protein/fat at every meal, and to still eat fruits/veggies, etc but make sure to pair them with something more easily digestible (like a starch) and to not make them the majority of my meal. So for example, if I was served a main dish salad for dinner, I'd make sure to not take a huuuge portion of salad, and to pair it with a couple of slices of bread w/ butter or oilve oil. 

Also, this is hopefully obvious and maybe you're already doing it, but if you can see a good counselor who has experience with eating disorders, I'd recommend it even if you aren't actively struggling at the moment. Adjusting to the ostomy is a lot for anyone, let alone someone with a history of an eating disorder. I've also found a specialist eating disorder dietitian to be quite helpful, though I know a good one can be hard to find. 

Hang in there! I hope you're doing okay. 

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